CHAPTER ONE

Has my halo slipped? (Or do I have a screw loose?) By Nicole Bradshaw

Chapter One

As I lay on the cold hospital bed surrounded by doctors, and felt the scraping of sharp screws as they pierced through skin and then bone into my skull to attach a halo brace to my head, I began to realise that this could be pretty bloody serious. This rheumatoid arthritis thing I’d been carrying around with me for about twenty five years, it could in fact kill me, especially if the top part of my spine continued its journey up through the base of my skull and into my brain. This was not good, things were not going well.

I had my first symptoms of Rheumatoid Arthritis when I was seven.

“I can’t Mum. I can’t do anymore, it hurts, it really hurts.”

“Just two more laps Nic, just two more darling and you’ve done it. You’ll get your badge.”

I continued swimming the lengths of Hornsby pool as my goggles filled with tears. Tears from the pain, the exhaustion and the fear. Why were my wrists hurting? I sobbed into the water between breaths. Why was it so hard to swim today? I had to finish. I had to – I wanted my badge. Fifteen hundred metres, I had to finish. Why was it hurting so much?

This was the first sign that something was wrong – agony. I remember it as clearly as if it were yesterday yet it was more than twenty five years ago. The pain achy, sharp, stabbing. Every stroke through the water sent a burning spasm deep into both wrists.

I’d been in hospital a couple of months before with a fever and pain so severe that it hurt to breathe. It had come on suddenly. I woke up feeling unwell, went to the toilet but had to call Dad to help me off. I couldn’t move, so he cradled me in his arms and carried me to his and Mum’s bed, where I lay crying as I waited for the doctor. Even the most gentle of Mum’s touches produced unbearable pain. I didn’t want to be comforted – it hurt. I was driven to hospital where Dad lifted me from the car and hugged me gently to him, all the way to a trolley in the emergency room.

Acute Septic Arthritis of the hip Mum and Dad were told after lots of time and many tests.

“Arthritis?But isn’t that an old person’s disease” Mum asked. I didn’t know what was wrong, I was just seven. The worst pain I had previously endured was when I flew over the handlebars of my bike and knocked out a tooth. A kiss and cuddle from Mum and Dad, a few band aids and five bucks from the tooth fairy sorted that pain out. No such luck this time.

I was anaesthetised while a drain was inserted into my groin. For two weeks it removed the pus from my hip while a drip flooded my infected body with antibiotics. This was the first time since my birth I’d been into hospital. The first time I’d ever been away from my family. The first time I’d had strangers come to me when I was scared and crying in the dark of night. The first time I was ever sick.

Mum and Dad were told they shouldn’t worry as once my hip was drained and the antibiotics had done their work all would be well and I wouldn’t have any further complications. I left hospital, and yes I was fine until one day when I was doing the thing I loved most. (Well aside from bashing up all the boys in the neighbourhood, or water skiing and beating my big brother, Landon and his friends in the race onto one ski). Yes, there I was swimming in a swim-a-thon which turned into the pursuit for the coveted fifteen hundred metre swimming badge, the badge few kids could ever hope to achieve. Just thirty laps and I was doing it in around thirty minutes (if my memory serves me correctly – and it usually does) when all of a sudden I found myself in pain that was agonizing even for the tough little tom boy that I was.

Doctors were baffled; it wasn’t a recurrence of the septic arthritis – bummer,that was easy to treat. And so I was thrust into a world of needles and tests and tablets and doctors and tears. I saw the fear and the tears in my parents’ eyes when they couldn’t take away my pain. Then there were my tears when I couldn’t stand the pain nor comprehend why first my wrists and then so quickly the rest of my body had become this burning inferno of hurt and anger. Doctors had no answers and so without any other ideas they put me on strictly enforced bed rest.

Nobody really knew what was wrong with me. Rheumatic fever was the first diagnosis. Rest was the treatment. A bed was set up in our family room and this is where I spent my days; watching TV, reading, eating or occasionally doing the homework that was sent from school with my little sister Ariarne.

Why couldn’t I walk when before I could run faster than anyone I knew? Why couldn’t I hold a drink or even a pen in my hand when before I could hold a bat, a ball and even the branches of my favourite climbing tree in our garden? Why did I have to stay in bed except when Dad carried me to the toilet? Why was my desire to swim thwarted, on Doctor’s orders, by parents who thought they were doing the right thing? Why did I have to watch through the window as my brother Landon and sister Ariarne splashed about in our backyard pool? Why was I suddenly a spectator in a life that I was once not only a participant but a leader? When would I be better?

“Can I just sit on the edge of the pool with my feet in? Please, I can watch Ariarne and Landon. I promise I won’t get in.” I was carried to the edge where I sat with my sister and brother splashing me, teasing me and laughing. They didn’t know how much I wanted to join them. They were just little kids too. They thought it was funny that I couldn’t play with them. They didn’t know how the emotional pain was probably worse than the physical. They didn’t know that their sister was sick. They didn’t understand. I didn’t even understand. It just seemed really unfair, some cruel punishment metered out for a reason that was unknown to me. I didn’t know what I had done. Had I been that naughty?

Mum and Dad found another doctor – he was supposed to be the best. But he wanted me to go into hospital for yep, you guessed it, more tests in the hope that they could work out exactly what was wrong with me.

“What if I give you the special pearl necklace you love? The one Nan and Pop gave me for my twenty first birthday?”

“No. I don’t want it.” I felt really sad at that moment. Mum and Dad didn’t want me to go into hospital. They just wanted me to be well. They wanted me to be home. They wanted me to be with them. They were scared. Probably more scared than I was. I was fearful of being away from them again. Hospital was a horrible place. A frightening place. A place that reduced me to tears. I was afraid of everything that I didn’t understand. I was afraid of the things that might be done to me. I knew I would be alone: Mum and Dad couldn’t be with me all the time. I would be unable to stop any needles or any other scary things happening to me. No amount of tears would halt a nurse or a doctor in their determined effort to do what they thought had to be done to me and for me. Mum and Dad were powerless. They didn’t have any answers. I didn’t know what questions to ask anyway. I was only a child at the mercy of this pain. A pain that at this point had not yet been diagnosed.

“Darling I am so sorry. If I could take the pain away from you I would.” I sat rigid on Mum’s lap, her arms gently encircling my sore body.

“Why is she crying?” Landon asked.

“She has to go into hospital so they can try to make her better.”
“I don’t want Coley to go. I want her to stay here with us Mummy.” Ariarne was sobbing too. I was due to go into the Children’s Hospital in just a few days’ time. There was no choice. It was the only way to try to find out what was causing me so much pain.

“Let’s go to the toy-shop and we’ll buy you something special to take with you. You can have whatever you want.”

I nodded through my tears. Whatever I wanted? Maybe hospital wouldn’t be so bad after all. At the toy shop, I got all the things I couldn’t choose between: toy soldiers, mosaic kits, paint by numbers, clothes for my favourite doll, a new favourite doll…. The list went on. I was lucky and Mum wasn’t crying anymore.

It was a four bed ward for four sick girls. I couldn’t comprehend that I was one of them and that I too was sick. I was so scared, I clung to Mum and Dad’s hands crying, shaking, hiding behind them, hoping I wouldn’t be noticed. Mum and Dad tried to stay with me as much as they could, but they couldn’t always be there. And there were strict visiting rules, even for parents, which were enforced by the iron fist of the scary Sister in charge.

When my parents weren’t there, the older kids looked after me. They explained to me that the girl in the corner in the plastic tent couldn’t breathe. They told me that the girl in the bed next to me had fits and would swallow her tongue and die. They said that everything that they did to you in this place would hurt. Everything.

I had a bone marrow biopsy. They lay me on my stomach in a room off the hall near my ward. They gave me an injection and then spent a lot of time digging and scraping the marrow from my bones. Afterwards I told Ariarne I had a sore bum. She thought that was hysterically funny and ran around the ward telling everyone. I just cried with the pain and the despair that someone else had done yet something more to hurt me. I didn’t really understand that all this pain was a means to an end. That by suffering now, I might suffer less later. I might.

I was wheeled through the underground tunnels of the hospital, back and forth from my bed to xrays and blood tests and needles and doctors who never smiled at me. Doctors who never talked to me. Doctors who hurt me . . . a lot.

I was made to walk without shoes on the hard cold floor of my ward. A dozen pairs of eyes watching my every move. It hurt. It felt like I had small pebbles under my feet but I pretended it didn’t cause even the slightest discomfort. I heard my Doctor tell Mum and Dad;

“Children tend to lie. They don’t always tell you what’s hurting. Often you just have to guess by the way they hold themselves or the way they walk.”

I guess my reluctance to admit that any part of me hurt came from the result of previous confessions: each time I revealed my pain, I was thrust further into a frightening world of medical procedures; a doctor or a test that caused more pain, another strange place, more strange faces. Each time I told someone who cared for me that I was hurting, I ended up drawing tears from their eyes and mine and usually a plethora of tests for my small body to endure.

But finally after many months of searching – a diagnosis – Juvenile onset polyarticular Rheumatoid Arthritis. Impressive title huh? I sometimes use that one today to bamboozle busy-bodies.

Since my diagnosis all those years ago, I’ve mostly tried to do the right thing by myself and my arthritis. But it took a long time for me to learn the implications of having this disease: if I knew then what I know now, I’d have beaten a path to the pool more often. And yes I would’ve done all those exercises physios and doctors demanded of me instead of fighting my parents every step of the way. That may have helped the pain, the stiffness, the deformity and the body I have today. It may not have, but God it would be worth the try. I guess I thought it was a temporary ailment back then, that one day I’d wake up and be well. My eyes would open, I’d spring from my bed, run downstairs and jump up and down in front of Mum and Dad saying,

“Look, look it’s over. It doesn’t hurt anymore.”

But that day never did come and so I’ve lived my life in fairly constant pain. Sometimes I function normally. When I say “normally” I mean I’m able to get out of bed and do the things I need to do to enjoy life to the full – despite the pain. Other times I have to call in reinforcements like my Mum to bend my legs, or roll me over. My days often start with breakfast in bed – something to eat and a handful of drugs. Maybe some hot packs and hands to rub my sorest bits and kick-start my body into action. Sometimes I just stay in bed for the day, or a week, depending how I am at the time.

So yes, Rheumatoid Arthritis (RA) – the type of arthritis I have – can be a little more than an annoyance in fact it can be a real pain (pun intended). It has always been lifestyle threatening; stopping me from doing many of those things that people of my age do. But it had never been life threatening – not in the true sense. It had never before attempted murder. I had heard of Basilar Invagination but hadn’t really expected it to happen to me. . . (No don’t worry, you can’t get Arthritis down there). A Basilar Invagination occurs when your Odontoid Peg – that’s the little peg your head sits on – moves up through the base of your skull. Mine did just that. I was merrily going along “living my best life”, when wham bam…

CHAPTER TWO IS NOW AVAILABLE FREE TO READ HERE – CLICK ON THE RIGHT OF THE PAGE

IF YOU WANT MORE PLEASE LEAVE ME A COMMENT HERE ON MY WEBSITE

EMAIL ME WITH ANY QUESTIONS OR COMMENTS hasmyhaloslipped@gmail.com

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34 comments

Thanks for a brave story thus far. I thought I was just getting a game of Scrabulous, and I ended up inspired! I pray that you’ll get some kind of sponsorship for your book. There are many people out there who would be edified by it – kids with RA who want the truth, parents who need to see the conditon through a child’s eyes, and doctors who need to be able to see the child, not just the symptoms! Good luck. Jenny.

If there was anyone out there who deserved to be published…it is you. Keep pushing and it will happen.
Sorry I told everyone you had a sore bum…if only I wasn’t too little to understand. It breaks my heart.

What a truly inspiratonal story written by a truly inspirational woman….and most importantly a very talented writer. This is an important story that needs to be told and I wish you all the very best in your pursuit to be published. I hope that you will continue to write, as it is a pleasure to read your heartfelt and honest words. I also congratulate you for having such an incredibly positive attitude towards life despite such hardships. We all could take a leaf from your book. As Ellen DeGeneres would say to you….”picture yourself published…visualise it…and it will happen.”

I loved your story. It flows with an easy-going rhythm and sparkles with your “tomboy” edginess. This edginess possibly pulled you through the tough times and takes the edge off (oh no, another pun) the nastier details for your readers.
Your story deserves a publisher and you deserve a break for a change. Good luck.

Nicole
From someone who spent most of her teenagehood , slightly in awe , and mostly terrified of your amazing intellect . I really enjoyed the humour and I cried to fully understand the pain your body puts you through . I mean this with my whole heart when I say ,your strengh attitude and humour and very clever brain ,continues to keep your spirit in flight . I for one will do everything this one person can do to get you sitting on Oprah’s couch and dancing in the aisles with Ellen
Meredith

I haven’t read your chapter yet but will. I am so inspired by your courage and incredible good humour. You express easily and write with an engaging and articulate voice. I’m in PR if you want mentoring in this area. I also have memories of Hornsby pool but never had the inclination to swim more than 2 laps:) I also knew of an Ashley Bradshaw back then – any relation? Cathx

In just one chapter alone, you reveal what it is to be a recipient of life dropping an arbitrary bomb on you – out of the blue, shocking, isolating and confronting. Thank you Nic for courageously shining a light on your journey; thus inspiring others to learn what they need to know for their own life-path.

Hey Nicole,
I had know idea that you could suffer arthritis to such an extent and from such a young ages. Thank you for educating me. Your life’s journey and courage are worthy of my reflection which i hope will put into perspective some of the challenges i face.

Well Nic,
I’ve known you for some part of your journey- yes I was one of the Physio’s who you ignored in the hydro pool!- but it is so fantastic to hear your story from the beginning. Thankfully you are a much better linguist than me and are able to inform and entertain people with your amazing story.I’m eagerly awaiting the continuation of the book. Fi

Thank you for sharing the first chapter of a very inspiring and revealing book of your journey through life with RA. I am anxiously awaiting the next chapters of your soon to be book(it will come true). I feel as though I am right there with you on this journey of your trials and triumphs with this evil disease that just keeps on taking. You are an inspiration to all you reach and a wonderful teacher of the trials of RA.

What a brave child you were and what a brave young woman you are now. Thank you for writing about your experience with RA — people do need to know that it isn’t just an “old people’s disease,” and that just rubbing a little Tiger Balm into the sore joint doesn’t even begin to relieve the pain. I hope, too, that you’ll get your wish and Oprah calls you. My thoughts are with you …

Your sister’s nickname for you is too cute! I have this to say ~~ forget the book ~~ I wanna see the movie!!!! Despite the fact that your first chapter is filled with so much pain, I actually was able to feel it and tears sprang to my eyes on numerous ocassions, you have a “tangible” sense of humor and you had me laughing “my head off”–yes pun intended!! I am 43 and was dx with RA a month ago, although I think I have had it all my life. I can relate to much of what you wrote. Who knows, you may save a lot of lives with this. After all, my neck has been making funny little creaky, cracky noises for the last 2-3 years, I have been steadily getting worse and worser headaches and the back of my neck needs constant massage. I try to tell nurses about it and they all look at me like I am crazy and tell me that “no one has that many cracking noises in their necks”. Well, I do. I will be reading your second chapter and if you have a book to purchase, either e-book form or published hardback I will be buying it. I can tell you this, you can publish an e-book through Amazon.com. They have a really neat writing, editing and publishing tool that you can use — free of charge — and then put your book back on their site. They take a small percentage, like 15% and the rest goes to you. Please check it out. Your biography is just the start for you my dear. You clearly have major talent as a writer. How would I know? Well, I have been told all my life that I should write a book. Danielle Steel herself told me that if she could judge by my email to her she would say I have the talent to write and be published. Now, if the diva of womens fiction can say that about “me” then I think I would be a pretty good judge of talent. You have it sister, in spades!!!! Don’t give up, you never have. Keep that tomboy alive and think of what you and your family could do with all the money that would come your way. Not to mention Oprah is retiring soon, you better get a move on and as I tell my kids when I want them to do something and do it fast….”Do the hustle!”—-Your #1 fan~~Tamye H. McSpadden — Internet name~~(Irishbookfairy)

Hi Nicole,
I was so inspired by you at school (PLC) dealing with all of your pain and coping with school with a quick wit and a smile. I was so glad to read your 1st chapter. You never complained ever. Keep writing – you have a natural talent for writing and an even better story.. Who would have known that you missed so many English lessons – brilliant. Best wishes, Woody (Amanda Wood)

Coley, may I call you that(?),
Inspirational story and so well told with that typical Aussie self-deprecating humour…
You should be crying, screaming from the rooftops “Why me? WHY ME???”, and I guess once, OK probably twice, you did, but that was then and now instead of letting it control and dictate things to you, you have found a way for yout to control at least a part of it, and probably a big part of it at that.
They say that those who get diseases, illnesses, or suffer serious misfortune are the truly unlucky ones but i think that this si not always true, as for some it unlocks the deepest reserves of strength, of fortitude, of humour, and yes of passion for the fight in everything they do. And you are clearly one of those…
I have no doubt that that you will see here, meet her, and yes even perhaps be on her show… as the only thing that would stop it is that there isn’t enough time on the two shows in Sydney…
…but then again there are all her otehr shows to come that tehy coudl slot yoru story into…
Uplifting you are Coley, so thank you…

Please keep writing this is excellent. What a great way to start raising awareness for JRA and RA. You really have a talent for this great job and please keep it up. I’m sure Oprah and Ellen would love to meet you as much as you would them 🙂

I can’t wait to read the rest. I am sure this will help those other people that are going through it and those of us who never have or will, understand a little better what you go through day to day. I can’t even begin to imagine what it must be like.

I have had RA for 54 years, since I was 23, and can’t stand the thought of a child going through such pain as I did before the world of biologic meds. I didn’t know about your condition until I read about you in RA WArrior, and have been pretty cavalier about wearing my neck brace for unstable cervical spine–you may just have saved this old gal’s life, and it’s been a splendid one despite the pain and deformities. Thanks so much.

Hi Lyn. I am so pleased when I hear stories like this, that something I have written helps someone. That’s the best reason to write and blog about our own experiences! Take care of your neck and your body. All the best Nicole

Hello Lyn! I heard about your story on the RA Warrior website. I was interested because of RA in my neck. I love the light comical jabs you include in your writing. It’s so serious but entertaining too. I would love to own a book of your story and pray that you will have it published in the near future.
Hugs!
Peggy